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My wife is bedridden - seeking advice


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Does anyone currently have (or know of someone) who has severe POTS and can’t get out of bed or walk?

My wife’s condition has progressed over 10 years to the point where she cannot sit or standup for more than 20 seconds without presyncope. It is to the point where she is living on a mattress 24 hours per day.

She is currently talking 5 mg of Midodrine 3x/per day but it doesn’t seem to do much. She tried Mestinon and Fludrocortisone but she couldn’t tolerate either drug. She has also tried fluids and salt, stockings, Spanx, abdominal binder and raising the head of the bed. None of this has helped.

She was hospitalized last fall for a month, doctors were flabbergasted by her condition. Doctors prescribed bed exercises for de-conditioning and the Midodrine, but it hasn’t done anything to improve her condition in over seven months. In fact, her condition continues to worsen.

Has anyone been in this position and been able to improve. If yes, what did you do or take?

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Hello @WBuffett - I am so sorry that you and your wife have to endure this!!! To answer your question: yes, I have been in that position, however for me it is only during a flare. I get so bad that if I stand up my BP either drops and I feel faint ( or actually faint ) or my BP skyrockets and I have autonomic seizures ( no circulation to the brain from blood vessels constricting ). At those times I have to crawl to the bathroom to prevent passing out. 

For me ( and many others, for that matter ) the ONLY thing that stops me from going to where your wife is now are IV fluids. In the past my autonomic specialist ordered IV fluids weekly for a month and it stopped the symptoms completely. Then my PCP would hospitalize me overnight for fluids whenever I got a flare and I would go in very sick, unable to walk etc - and the next morning I would leave skipping and hopping!!! Today I have a port and get IV fluids up to 3 times a week at home and am much improved ( compared to back then, of course still live within the limitations of POTS ). Here is an article that explains that IV fluids are a proven treatment for severe cases of medication refractory POTS, maybe you want to show this to your wife's doctor and explain that it is used by the leading physicians in the autonomic field:    https://pubmed.ncbi.nlm.nih.gov/28185102/

It is no surprise that your wife is now bedridden - however she has to be terribly deconditioned by now, and that makes POTS much, much worse.  When we spend all our time supine in bed the act of getting up and adjusting to being upright takes much, much longer, so the symptoms of presyncope and syncope become worse every time we stand up. Orthostasis ( the ANS responding to being upright ) is a very complex process and is disturbed in POTS patients. I am not sure if you live in the US but since your wife is homebound she qualifies for home therapy ( for most insurances ). What is very effective in deconditioned POTS patients is physical therapy, I have received it when I was at my worst. They come to your home, assess her abilities and then work on slowly strengthening her body to relearn how to first sit up and then stand up. They teach exercises lying down first, to strengthen her muscles, and then ( when she regained some of her strength ) graduate to other exercises. all this is done to her tolerance, so no need to be afraid. 

Once she has regained some of her strength and lost some of the fatigue the doctors can start working on her medications again. In her current state most meds are probably too strong, and cant help due to her deconditioning. Medications cannot make her get up and move - her body has to relearn that. If her physicians are flabbergasted they hopefully will be open to these proven treatments. Feel free to share this response and the above link with her doctor - this regimen of IV fluids and PT has helped many POTS patients, and it definitely has improved my POTS when it was at its worst. I too could not tolerate most commonly used POTS medications, so taking a more aggressive approach with IV fluids was totally appropriate. I strongly believe that these measures will help your wife - please ask her physician to consider them. 

Don't lose hope  - the only thing that will keep her in this condition is not doing anything. Feel free to PM me anytime you have further questions or need help. Best wishes!!!!!

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Need more info. What tests has she had? Where has she been seen? What happened when she had those meds? Is her norepinephrine high or low or normal? What did her tilt table test say? NeuroCardiogenic Sycope? Does she actually lose consciousness if she were to keep standing? Did they try a beta blocker? Was she not a good candidate for that? Does she have any other issues like autoimmune, Parkinson's, MS?

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I have a few more questions. Can your wife get to the washroom/bathe on her own? Can she change positions in bed on her own? Is she able to get out to the hospital/doctor’s?

I became almost completely bedridden, except for those things. I would always have to lie down at doctor’s appointments/ER and recline in my husband’s car.  I also used the word bedridden, but found it confuses the medical experts because I had no bed sores, etc.

 

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14 hours ago, Pistol said:

Hello @WBuffett - I am so sorry that you and your wife have to endure this!!! To answer your question: yes, I have been in that position, however for me it is only during a flare. I get so bad that if I stand up my BP either drops and I feel faint ( or actually faint ) or my BP skyrockets and I have autonomic seizures ( no circulation to the brain from blood vessels constricting ). At those times I have to crawl to the bathroom to prevent passing out. 

For me ( and many others, for that matter ) the ONLY thing that stops me from going to where your wife is now are IV fluids. In the past my autonomic specialist ordered IV fluids weekly for a month and it stopped the symptoms completely. Then my PCP would hospitalize me overnight for fluids whenever I got a flare and I would go in very sick, unable to walk etc - and the next morning I would leave skipping and hopping!!! Today I have a port and get IV fluids up to 3 times a week at home and am much improved ( compared to back then, of course still live within the limitations of POTS ). Here is an article that explains that IV fluids are a proven treatment for severe cases of medication refractory POTS, maybe you want to show this to your wife's doctor and explain that it is used by the leading physicians in the autonomic field:    https://pubmed.ncbi.nlm.nih.gov/28185102/

It is no surprise that your wife is now bedridden - however she has to be terribly deconditioned by now, and that makes POTS much, much worse.  When we spend all our time supine in bed the act of getting up and adjusting to being upright takes much, much longer, so the symptoms of presyncope and syncope become worse every time we stand up. Orthostasis ( the ANS responding to being upright ) is a very complex process and is disturbed in POTS patients. I am not sure if you live in the US but since your wife is homebound she qualifies for home therapy ( for most insurances ). What is very effective in deconditioned POTS patients is physical therapy, I have received it when I was at my worst. They come to your home, assess her abilities and then work on slowly strengthening her body to relearn how to first sit up and then stand up. They teach exercises lying down first, to strengthen her muscles, and then ( when she regained some of her strength ) graduate to other exercises. all this is done to her tolerance, so no need to be afraid. 

Once she has regained some of her strength and lost some of the fatigue the doctors can start working on her medications again. In her current state most meds are probably too strong, and cant help due to her deconditioning. Medications cannot make her get up and move - her body has to relearn that. If her physicians are flabbergasted they hopefully will be open to these proven treatments. Feel free to share this response and the above link with her doctor - this regimen of IV fluids and PT has helped many POTS patients, and it definitely has improved my POTS when it was at its worst. I too could not tolerate most commonly used POTS medications, so taking a more aggressive approach with IV fluids was totally appropriate. I strongly believe that these measures will help your wife - please ask her physician to consider them. 

Don't lose hope  - the only thing that will keep her in this condition is not doing anything. Feel free to PM me anytime you have further questions or need help. Best wishes!!!!!

Hi @Pistol - I can't thank you enough for your response. I am so happy to hear that IV fluids are giving you your life back. My wife had IV fluids in the hospital but only a couple of times (1 litre of saline each time) and it didn't seem to help. But now I am wondering if it wasn't enough fluid and was not for a long enough time. How do you know what the right amount of IV fluids are to use and do you need to do it for a few weeks to see an improvement? Thank you as well for the study link on pubmed - very helpful. 

I have never given up hope that something would appear (a new drug or therapy) that would help my wife get her life back. Thank you for your compassion and assistance so far!

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6 hours ago, KiminOrlando said:

Need more info. What tests has she had? Where has she been seen? What happened when she had those meds? Is her norepinephrine high or low or normal? What did her tilt table test say? NeuroCardiogenic Sycope? Does she actually lose consciousness if she were to keep standing? Did they try a beta blocker? Was she not a good candidate for that? Does she have any other issues like autoimmune, Parkinson's, MS?

Hi @KiminOrlando - thank you so much for your response. My wife was diagnosed in 2010 with Hyperadrenergic POTS (tilt table test with POTS specialist) with high norepinephrine levels. She has been progressively ill for over 10 years, most of that time debilitated with POTS - she was also diagnosed with severe migraines, gastroparesis and Hashimoto's. She also has sensory problems (extreme sensitivity to light, motion, vibrations, noise and smells). No NeuroCardiogenic Syncope. Upon sitting or standing, she feels presyncope but gets enough warning to get down before she faints. She has fainted before when she couldn't make it back in time from the bathroom. In the hospital, in the fall, she had a MRI, EMG, many blood tests - everything was normal (e.g. no indication of MS, Parkinson's). The Mestinon made her feel stoned/out of it (in a bad way) on a very small dose and the Fludrocortisone made her migraines so much worse. She has not tried beta blockers.  Her original POTS specialist was good with the diagnosis, but wasn't that helpful with a treatment plan and has since moved away.  She is on a long waiting list to see a new one. I hope this helps for now to give a bit more information. I really appreciate all your help!

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36 minutes ago, PotsieCrocheter said:

I have a few more questions. Can your wife get to the washroom/bathe on her own? Can she change positions in bed on her own? Is she able to get out to the hospital/doctor’s?

I became almost completely bedridden, except for those things. I would always have to lie down at doctor’s appointments/ER and recline in my husband’s car.  I also used the word bedridden, but found it confuses the medical experts because I had no bed sores, etc.

 

Hi PotsieCrocheter - thank you so much for your response. In the last 10 months, she has not been able to get up to go to the bathroom or bathe on her own. She can move positions in the bed, and do bed exercises, so no bed sores, thankfully. She also has to recline in the car and at her appointments and the last time she had to go in a stretcher to the hospital. I am sorry that you have experienced this as well :(. 

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8 hours ago, WBuffett said:

How do you know what the right amount of IV fluids are to use and do you need to do it for a few weeks to see an improvement?

Dear @WBuffett - I used to have to go to ER often due to seizures and fainting. They would run 1 l NSS ( Normal Saline Solution ) really fast, over 1 hours. This never helped. My autonomic specialist usually gave me an order for 1 - 2 l over 2 - 4 hours. This too would not help me. Finally we figured out that 1 l over 6 - 8 hours ( 150 - 200 ml/hr ) helps fastest and longest. My 2 sisters, who also have HPOTS, get IV fluids as well and they also have found that this rate works best; anything faster gives them headaches and high BP. Considering your wife's migraines I think even slower infusions ( 125 ml/hr ) might be needed.  As to how long - before getting weekly fluids I would have to be admitted for fluids overnight every 6 - 8 weeks and would get 3 l in 24 hours. This is no longer necessary - I get them weekly at home. 

Doctors often do not want to use IV fluids for HPOTS due to the high BP that comes with it, but in my case it is proven that the IV fluids LOWER my BP and restore balance in the ANS. The theory behind this is that in HPOTS the ANS causes sympathetic overstimulation, which means there is more norepinephrine which will cause vasoconstriction, resulting in most of our symptoms. The IV fluids restore balance by several mechanisms: they create a steady pressure within the vessels which stops the urge to constrict and in return stops the dumping of norepinephrine, they help to dilate vessels and allowing for circulation to the brain, and - obviously - they counteract hypovolemia ( low blood volume ) and therefore stop the faulty ANS response. 

As to where and how to get IV fluids: they are given in Infusion centers, some urgent care clinics, some doctor's offices and ambulatory surgery clinics. I live one hour away from the nearest town that offers any of those services and since I am homebound d/t POTS I qualify for home care services. Problem is that homecare agencies require a permanent IV access for IV home therapy. Since I was unable to tolerate traveling every week for IV fluids - and obviously benefitted from the therapy - my docs agreed to a port. If you live closer to a facility that offers IV fluid therapy and she can travel there a port would not be necessary. She can simply show up with a prescription in hand. 

I have been getting home infusions for the past 2 years and have only been hospitalized for POTS related problems ONCE!!! I also rarely pass out or have a seizure ( compared to several times a week at my worst ). The fluids have helped me to be able to be active around the house and exercise, which in turn improved the orthostatic symptoms greatly. My BP has improved to the point that I was able to stop or decrease some of my medications. 

If her physician is not willing to try IV fluids home PT can still improve her to a degree, however it alone would likely not give her the strength and stability that IV fluids have given me.  

I hope this is helpful and I hope she will improve. Good that she is on the waiting list for a specialist - it seems she is in dire need of intervention!! Best wishes - hang in there!!!

 

 

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I was pretty much bedbound like your wife for about 2 years - I didn't know I had POTS at this time ( I'd been having symptoms since I was a teenager but I didn't even know POTS existed and my symptoms were dismissed by doctors as anxiety or depression or just pure laziness!)  Any day I felt a little better I would try to do too much (and at times too much could be as little as having dinner out of bed) and then I would spend days or weeks or months recovering before doing exactly the same thing!  What helped me get out of it? Recognising this boom and bust cycle and forcing myself to do the same thing every day, regardless of how good or bad I felt.  Doing small amounts of exercise multiple times a day to recondition my muscles.  Modafinil (Provigil) gave me a bit more energy to allow me to start this exercise programme although I stopped taking it after a few years as the benefit had worn off.

I did all this before finally getting a POTS diagnosis about 4 years ago swiftly followed by a hEDS diagnosis and a lot of my symptoms now make more sense to me.  I'm still pretty much housebound as I did not respond well to any meds and unfortunately the UK does not support the use of IV fluids for POTS except in emergency situations.   I use waist high compression, vast amounts of fluid and salt and try to do as much exercise as I can tolerate but I still get flares when I'll be stuck in bed for a bit again.  My GP tells me it's a marathon, not a sprint - tell your wife not to give up hope!  And please be kind to yourself - it can be very difficult caring for someone in your wife's situation so make sure not to neglect your own physical and mental health!

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@WBuffett - since your wife has autoimmune disease ( Hashimotos ) she might benefit from IgG, several members on this forum that have AI causes for their POTS ahve been helped by this. 

56 minutes ago, cmep37 said:

Modafinil (Provigil) gave me a bit more energy to allow me to start this exercise program

I use low dose Methylphenidate ( Ritalin ) for the same reason - it gives me energy and keeps me from getting tired too quickly, and it is gentler than Modafinil ( although my specialist prefers Modafinil ). A med like that may very well be beneficial to your wife. I always get started at half of the lowest available dose and then increase to tolerance. Ritalin has a very short half life, so it stays in the body only for a few hours, enough to get chores done and do a few exercises. 

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Hi, @WBuffett,

I am so sorry that you and your wife are dealing with this.  You mentioned your wife had not tried a beta blocker - I am hoping that she will be able to at least try one, under her doctor's supervision. A small daily dose of a non-selective beta blocker (propranolol in my case, but there are many others) made me functional again. I know that a beta blocker doesn't work for everyone and that not everyone can take them but, knock wood, it has thus far worked for me. It doesn't take away every symptom and I still have flares, but it gets me pretty close to what I was before. I can drive again; I'm not dizzy and light-headed 24/7 (I did have pre-syncope, although I never passed out).  I can walk through my house without getting tachycardic.  I can stand up in the shower and even wash my hair, and stand at the sink and wash the dishes!!  I, too, had bouts of gastroparesis.

My doc did tell me to get as much exercise as I could, as the deconditioning you keep hearing about is a real concern, and the beta blocker has made that possible. Before that, I couldn't push a grocery cart through the store or carry a 20-lb. bag of dog food without getting tachycardic and high blood pressure. If something scared or startled me, I would get tachycardic.  I also drink more water, try to make sure there is enough salt in my diet, and try to eat frequent small meals because I've discovered that allowing myself to get hungry can bring on symptoms.  The doc wrote me a prescription for compression stockings and, even though I was measured by a professional, I never could get the things on so they're sitting in my closet.  One thing about the beta blocker, in case your wife tries one - I take mine while still in bed, an hour or two before I actually get up in the morning, so it will be fully on board by the time I get up and start doing things. 

Also - and this is speaking only from my personal experience - I found that when I slept with the head of my bed raised, the "brain fog" worsened.  I have an adjustable bed and, with my doctor's OK, I sleep with the *foot* of my bed slightly elevated. Just a bit; it doesn't take much. I believe this helps blood circulation to my brain.

I wish you both the best of luck and hope that a treatment will be found for your wife that will be effective.  She is fortunate to have you in her corner!!

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6 hours ago, Delta said:

You mentioned your wife had not tried a beta blocker

Hi @Delta - thank you so much for your thoughts and I am so glad that Propranolol is helping you to get your life back. My wife's heart rate is in the 50's from taking Midrodrine and it hasn't helped much at all. Is the purpose of a beta blocker to lower one's heart rate? Is there another purpose/benefit to taking a beta blocker if one's heart rate is already low from the Midrodrine?

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7 hours ago, Pistol said:

I use low dose Methylphenidate ( Ritalin )

Hi @Pistol - when you say Ritalin gives you energy, do you mean it keeps you upright and allows you to stand/or sit longer? For IgG, do you know where they went to get it and is it a complicated process? I am not even sure if it is available in my country. 

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8 hours ago, cmep37 said:

I was pretty much bedbound like your wife for about 2 years - I didn't know I had POTS at this time ( I'd been having symptoms since I was a teenager but I didn't even know POTS existed and my symptoms were dismissed by doctors as anxiety or depression or just pure laziness!)  Any day I felt a little better I would try to do too much (and at times too much could be as little as having dinner out of bed) and then I would spend days or weeks or months recovering before doing exactly the same thing!  What helped me get out of it? Recognising this boom and bust cycle and forcing myself to do the same thing every day, regardless of how good or bad I felt.  Doing small amounts of exercise multiple times a day to recondition my muscles.  Modafinil (Provigil) gave me a bit more energy to allow me to start this exercise programme although I stopped taking it after a few years as the benefit had worn off.

I did all this before finally getting a POTS diagnosis about 4 years ago swiftly followed by a hEDS diagnosis and a lot of my symptoms now make more sense to me.  I'm still pretty much housebound as I did not respond well to any meds and unfortunately the UK does not support the use of IV fluids for POTS except in emergency situations.   I use waist high compression, vast amounts of fluid and salt and try to do as much exercise as I can tolerate but I still get flares when I'll be stuck in bed for a bit again.  My GP tells me it's a marathon, not a sprint - tell your wife not to give up hope!  And please be kind to yourself - it can be very difficult caring for someone in your wife's situation so make sure not to neglect your own physical and mental health!

Hi @cmep37 - so great to hear from you and thank you for sharing your story with us. How long did you do your exercise program before you noticed a difference? My wife has been doing her bed exercises for 9 months and it hasn't really made an impact. 

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9 hours ago, WBuffett said:

when you say Ritalin gives you energy, do you mean it keeps you upright and allows you to stand/or sit longer?

@WBuffett - Ritalin gives me enough energy to be active. In your wife's case it might give her enough energy to be able to do exercises that allow her to sit up rather than just supine exercises. It also really increases attention and focus. 

9 hours ago, WBuffett said:

For IgG, do you know where they went to get it and is it a complicated process? I am not even sure if it is available in my country. 

Here are a few posts from members on IVIG, I hope it helps. 

Here is also a link     https://clinicaltrials.gov/ct2/show/NCT03919773

 

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10 hours ago, WBuffett said:

Hi @Delta - thank you so much for your thoughts and I am so glad that Propranolol is helping you to get your life back. My wife's heart rate is in the 50's from taking Midrodrine and it hasn't helped much at all. Is the purpose of a beta blocker to lower one's heart rate? Is there another purpose/benefit to taking a beta blocker if one's heart rate is already low from the Midrodrine?

Good morning, @WBuffett!

Good question! My understanding of beta blockers is that ones labeled "selective" work on one's heart rate, and "non-selective" ones, which is what mine is, work on the entire autonomic nervous system.  Which seems to  be what I needed, because my entire ANS was going haywire.  What I'm wondering is if a non-selective beta blocker alone might help your wife - obviously that needs to be discussed in detail with her docs but if the Midodrine isn't helping to begin with, it may be worth looking into.

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I did basically the same thing as @cmep37 after experiencing similar symptoms to your wife. I have hyperadregenic POTS, OH and the autoimmune disease (mixed connective tissue disease). Basically that just means I show symptoms of several autoimmune diseases but not enough of any particular one for a firm diagnosis. At my worst, about 9 months after sudden onset, I weighed 85# and was completely debilitated, in the hospital for 5 days and fed through an IV for 6 weeks so I know how very bad it can be. I was told to get up every hour and lean against a wall, never stay in bed all day, even if it’s just going to the couch and exercise under the direction of PT advice. Getting up was pure h*ll, exercising was probably the hardest thing I have ever done. My husband would basically hold me upright and we would “dance” every night for 5 minutes to help retrain my body. Treating the MCTD with plaquenil (Very, very slowly titration up) was the first thing to help the incredible fatigue, knowing my limits and increasing exercise by seconds a week all helped. I used Modafinil for fatigue because Ritalin gave me tachycardia. I have tried 4 or 5 beta blockers, some non-specific ones increased fatigue but there’s now Corlanor which doesn’t lower BP but decreases HR. I tried pyridostigmine, midodrine (caused diarrhea) 3 alpha blockers (still take one). I started SCIG about 18 months ago in the US but had to prove to the insurance company that my dysautonomia was related to the autoimmune disease. I had the MCTD diagnosis but also sent my blood to Germany to Celltrend to look for specific autoantibodies related to POTS. One showed up and that helped persuade the insurance to cover the cost. It’s very expensive otherwise. I choose the subcutaneous route over IV because I get migraines easily. Mine comes from a company in the states, I don’t know how it works elsewhere. I am pretty sure you have to have autoimmune disease to qualify for it but I suspect the companies that make it offer rebates for out of pocket payers. The IG helps with fatigue, muscle pain, malaise. The IG, plaquenil, other drugs, knowing my limits—which are substantial, and exercise all do a little bit and every little bit helps with disease. What helps me the most is being bloody minded, vowing to never, ever get so sick again. I exercise most days, no matter how I feel, even if it’s only for a few minutes. I now weigh 120 pounds, have actual muscles (they are small but hey) and while still housebound I don’t pray to die every night. I have good and bad days and flares but in general I am at least mostly happy. Two books I found helpful are The Dysautonomia Project and for acceptance of this How to be Sick by Toni Bernhard. I sincerely hope that any of this is helpful. Feel free to PM me.

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For the question about Ig. I've been getting IVIg off and on for three years. A nurse comes to my house and does the infusions. A neurologist ordered it but it was extremely hard to get insurance to approve it because it's very expensive. I've had to have the dosing and schedule adjusted because of adverse effects. When I last got it, I was getting 30g over one day every two weeks down from 60g over two days every three weeks. The biggest problem I have from it is brain swelling. I haven't gotten it in a few months due to Covid. I can tell the good effects are wearing off. Since it appears Covid is going to be with us for some time I'm considering going to subcutaneous Ig where a nurse will come out only once to check off that I can do the injections myself. Then I won't need to have someone in my house who could infect me. I live in NC where the cases are on a steady climb. 

The main condition I was prescribed IVIg for was autoimmune autonomic neuropathy but I have many diseases. A few right off the top of my head are hyperPOTS (by BP and HR), complex regional pain syndrome (CRPS) type I, gastroparesis, small fiber neuropathy, Elhers-Danlos hyper mobility type, undifferentiated connective tissue disease (sort of in the middle of Lupus and rheumatoid arthritis with symptoms from both), migraines, a heritable polyendocrine disease called polyglandular autoimmune disease type II (PGAII or APSII) which includes in my case, primary adrenal insufficiency (Addison's), thyroiditis, primary early ovarian failure and a few other more minor things. This PGAII also predisposes me to other diseases such as type 1 diabetes, myasthenia gravis (I've had ocular myasthenia for over 30 years) and MS. My daughter inherited this from me but has not yet had time to accumulate as many diseases this can cause as I have. I also have an abnormally high hematocrit which is probably a relative polycythemia caused by low plasma volume. I believe my relative high red cell to plasma ratio causes my blood to be "thicker" and because the IVIg increases viscosity further, I have more adverse effects than someone with normal blood "thickness."   

I find a lot of things are helped at least a little by the IVIg and some by a lot. It's the only treatment I've had that's really helped overall although I did have improvements when I was taking Plaquenil along with azathiaprine (Imuran). For POTS specifically, it did not improve my HR but it does decrease the dizziness and I can do more thus increasing my quality of life. I pass out less. I did have periods, sometimes that went on for weeks or longer, where I'm mostly bed bound even though I can bath and get to the bathroom, even if I have to use a motorized wheelchair to do so.  The frequency of these times is less and the periods are for shorter stretches of time now in general.   

In summary, IVIg or subcu Ig may help your wife but it's hard to get insurance for it the US. I'm sure it's clear from the above my case is very complicated so it's hard to tease out the efficacy for my individual diseases. There's no doubt it helps me overall.    

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I am so sorry your wife and you are going through this. I have found like @Pistol hydration therapy has helped immensely. My doctor prescribed the therapy and I do 3 times a week. I had a port placed last summer, therefore, I only have to have a nurse come out once a week to insert the needle. I went through numerous beta blockers and also didn't tolerate the standard POTS' meds. I am now on Ivanbradine that I order through a Canadian Medstore with an rx from my doctor. If I take Ritalin, I have to take a teeny amount or my heart rate goes crazy. I would definitely ask about PT, hydration options and Ivanbradine. Also, I have dealt with debilitating migraines. Have she ever tried the monthly prescription shot Amiovig? It has changed my life. Cut my migraine days by 95%. I hope some of this helps. 

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On 7/27/2020 at 3:15 AM, WBuffett said:

How long did you do your exercise program before you noticed a difference? My wife has been doing her bed exercises for 9 months and it hasn't really made an impact. 

I would say 9 months is plenty of time to notice a difference.  Has your wife been able to increase the amount of exercise she can do during this time?  I started with 2 minutes once a day, then after a week 2 minutes twice a day gradually building it up until I now do more than an hour of mainly recumbent exercise plus a 10-15 minute walk or recumbent cycling every day.   Any more than this is too much for me, miss a few days and I feel much worse!  It wasn't easy to increase - there were days where I just wanted to give up but I'm glad I persevered.

One other thing I thought of is whether your wife is still having periods? Apologies if this is TMI but my periods were very heavy and anything that reduced the amount of blood I had in circulation was a bad thing.  As a teenager I only had POTS symptoms during and just after my period leading me to think my problems were gynae related.  I have a Mirena IUD which has more or less eliminated my periods although I know they don't suit everyone, particularly if you have EDS.   Even just running packs of the pill together to reduce the number of periods would be something to consider.

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19 hours ago, Hershey said:

I am so sorry your wife and you are going through this. I have found like @Pistol hydration therapy has helped immensely. My doctor prescribed the therapy and I do 3 times a week. I had a port placed last summer, therefore, I only have to have a nurse come out once a week to insert the needle. I went through numerous beta blockers and also didn't tolerate the standard POTS' meds. I am now on Ivanbradine that I order through a Canadian Medstore with an rx from my doctor. If I take Ritalin, I have to take a teeny amount or my heart rate goes crazy. I would definitely ask about PT, hydration options and Ivanbradine. Also, I have dealt with debilitating migraines. Have she ever tried the monthly prescription shot Amiovig? It has changed my life. Cut my migraine days by 95%. I hope some of this helps. 

Hi @Hershey - so great to hear from you. My wife tried so many preventative migraine medications and nothing ever worked. Her issues that are most debilitating are the auras and vertigo - not so much the pain, although she suffers this as well. She was thinking that maybe that's why nothing really worked. Do you get auras and vertigo with your migraines?

It is so great to hear that it has helped you so much. Did it work right away from the first injection or did it take a few doses first? Did you have any side effects from the Amiovig?

Glad the Ivabradine is working for you as well. Do you have hyperPOTs? How does it compare to the other meds you have tried? Can you sit up or walk longer without suffering presyncope? 

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5 hours ago, cmep37 said:

I would say 9 months is plenty of time to notice a difference.  Has your wife been able to increase the amount of exercise she can do during this time?  I started with 2 minutes once a day, then after a week 2 minutes twice a day gradually building it up until I now do more than an hour of mainly recumbent exercise plus a 10-15 minute walk or recumbent cycling every day.   Any more than this is too much for me, miss a few days and I feel much worse!  It wasn't easy to increase - there were days where I just wanted to give up but I'm glad I persevered.

One other thing I thought of is whether your wife is still having periods? Apologies if this is TMI but my periods were very heavy and anything that reduced the amount of blood I had in circulation was a bad thing.  As a teenager I only had POTS symptoms during and just after my period leading me to think my problems were gynae related.  I have a Mirena IUD which has more or less eliminated my periods although I know they don't suit everyone, particularly if you have EDS.   Even just running packs of the pill together to reduce the number of periods would be something to consider.

Hi @cmep37 - thanks for this. My wife started with 10 different bed exercises starting at 5 reps per day and she has increased it up to 50 reps per day, but it hasn't helped. She is not doing any cardio, so maybe this is why it is not helping. Did you improve at all before you started doing the cardio? My wife is in menopause so that is not likely an issue wrt blood flow. 

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@WBuffett - I am wondering if maybe your wife is not improving from the exercises b/c they are performed only lying down? Normally supine exercises are dome to maintain muscle tone while bedridden, they are a basic exercise that should be progressed to sitting exercises. The whole point of exercises is to not only strengthen muscles but also enable us to graduate to upright exercises. Deconditioned people - such as your unfortunate wife - need to re-learn how to be upright. This has to be done slowly, gently and carefully, but without teaching her body to be able to be upright again she cannot improve.

Here are exercise tips designed for POTS patients, from the Dysautonomia International website:  http://www.dysautonomiainternational.org/page.php?ID=43

Here is another good article:   https://myheart.net/pots-syndrome/exercise-in-pots-syndrome/

Again - I would like to point out that your wife probably would benefit from In-home Physical Therapy. Her PCP can order this, even over the phone, so she would not have to endure a visit. I have found great results from using a rowing machine. I can exercise sitting down and it requires upper  and lower body muscles, so it is a two-for-one. Mine is a bottom-of-the line cheap model with 8 settings. I started 1 minute on the lowest setting twice a day and have graduated to 25 reps on the third setting. Right now I am reconditioning from a bad flare and am back to 1 minute on setting one - another added benefit that I can change the settings to my abilities. 

 

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On 7/24/2020 at 9:53 PM, WBuffett said:

Does anyone currently have (or know of someone) who has severe POTS and can’t get out of bed or walk?

My wife’s condition has progressed over 10 years to the point where she cannot sit or standup for more than 20 seconds without presyncope. It is to the point where she is living on a mattress 24 hours per day.

She is currently talking 5 mg of Midodrine 3x/per day but it doesn’t seem to do much. She tried Mestinon and Fludrocortisone but she couldn’t tolerate either drug. She has also tried fluids and salt, stockings, Spanx, abdominal binder and raising the head of the bed. None of this has helped.

She was hospitalized last fall for a month, doctors were flabbergasted by her condition. Doctors prescribed bed exercises for de-conditioning and the Midodrine, but it hasn’t done anything to improve her condition in over seven months. In fact, her condition continues to worsen.

Has anyone been in this position and been able to improve. If yes, what did you do or take?

Hi, very sorry to hear about what your wife has been going through for 20 years.  The first thing I'd ask is - does hse have access to a doctor ont eh DINET list?  I would post separately on the forum indicating where you live to see what good doctors are in that area.  Care is specialized an an expereinced doctor would be a big help.  I see she's tried some dysautonomia meds but there are many more and sometimes combining the medications helps even if the medications themselves don't.  People above have suggested meds which work for them but it is very individualized, so a doctor can best help you figure out what might work for your wife. 

 I also see she can't stand without experiencing presyncope.  Presyncope is not fainting and many of us feel like we might faint but we actually don't faint.  Personally, if I had stayed in bed because I felt presyncopal, I would never have gotten better and would have deteriorated greatly.  Pushing myself to stand and walk, even though i felt very sick is what got me better.  You have to be very careful to push yourself without actually hurting yourself.  I see that your wife fell and was in the hospital, so she needs to do this under a doctors guidance.  But if she can find a way to practice sitting, standing, walking even for just a few minutes a day that will help her a lot.   Then you just gradually increase the amount of time.  I stood for one minute, then 2, then 3 etc.  Then did the same with walking.

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